Big news

Guess who is off oxygen!

Good Morning Amy- 
We have received and reviewed Abigail's overnight study. Her results look great and your log was excellent, very helpful in interpreting her study, thank you! 
Dr. Khan is happy to discontinue her supplemental oxygen at this time. I will send a discontinue order to Preferred Home Care.
Below is a summary of her results! 
Have a great weekend 
Julie Troglia, RN for Dr. Khan 

Requested overnight pulse ox results for patient. 
Results summary as follows; 
TESTING DATE: 9/22/15 
TESTING PERFORMED ON: Room air 
Total valid sampling time: 7 hours, 43 minutes 
Patient's current oxygen therapy: 0.0625 lpm at night only 
> 90% : 99.4 
> 80% & < 90%: 0.6 
< 90% : 0.6 
< 88%: 0.1 
< 80% : 0.0 
< 70% : 0.0 
< 60% : 0.0 
MEAN SpO2= 97.6 % 

Dr. Khan review and recommendations; 
1. Good test quality with excellent patient log information 
2. Abigail passes her overnight study on room air. 
3. Discontinue supplemental oxygen. 

Hike

We notice we were a week late for the leaves changing but we saw some trees changing late. 

On the hike we saw a teepee.  

The hike ended at a waterfall but there was hardly any water.  It was still beautiful and the girls played for a bit before headed back down. 

We did this hike last year and our family photo was a lot smaller!

Abigail's third hike.  She is great on hikes. 

Before heads back down Jon and the girls went climbing.   What a great day to enjoy the outdoors

4 months

Today was Abigail's 4th month appointment. 

12 pounds and 23 and 3/4 inches long

She is smiling, laughing, hands in mouth, and once in a while she grabs a toy.  

Things the doctor wants her to work on is grabbing more, using arms more, head control and some other small things. She is tracking on growth to her birthday, weight to her due date, and some things are a little slower then her due month but not to concern as of now. Primary Doctor wanted us to get a new gi Doctor as she has done nothing for Abigail and nothing has changed and the doctor called her colicky.  Primary Doctor and I agreed that is not correct.  Doctor also wants her to go to a specialist to work on motor skills to get her up to date.  She is sleeping 7 hours at night.  Yeah!

Otherwise she got her four month old shots today and still doing great off oxygen during the day. 

Our baby girl is growing way to quick

Pictures

This weeks she starts all her doctors visits so I will have updates soon!

Pulmonology

Today was Abigail's lung Doctor appointment. 

Weight 11.6

Height 24.2

Bp 86/47

She grew one inch and one pound in month month.  Growth is good. 

Doctor was pleased on Abigail's progress of being off oxygen during the day and on oxygen during the night.  We are going to do a over night study off oxygen for 8 hours.  We will be doing this same routine until December 14th when we go back and hoping to be off by then.  Three more months of oxygen!

Girls up too

I asked the girls what they did all day.  Well here you go, 

http://www.wagsandwhiskers-petcare.weebly.com/

Pretty inpressive what three girls come up with.  

Mt Herman

I am going stir crazy in the house all the time. This morning I took all three girls and a friend to go for a two mile hike in the mountains.  The drive took longer then the hike but I love the woods and the views.  The trees are not changing yet but soon. 

Hiking

Today was a sum what normal Amy day.  We went for a hike today.  It has been almost 10 months since my last hike and I really needed This today.  Abigail did amazing all day.  She slept and ate.  She only cried the last 15 minutes on the way home and I did not care because she did great. I think more hikes in my future.   

Swim

It was a great evening with Olivia and Heaven.  Heaven is in swim lessons and while she did her thing me and Olivia swam a mile.  It was fun swimming with her.  Then when Heaven was done we played on the slide for 5 minutes.  What a wonderful night.  

Three months

Abigail is three months today, smiling and giggling.  She is 10.8 pounds and 23 inches long.  She is currently on a pulse ox machine during the day. If she stays between 93-100 for oxygen and below 180 for heart rate she is off oxygen during the day.  She is on day three of no oxygen during the day. She gets put back on at night.  Today's doctors appointment her medication amount triple to control the acid reflux.  Her anus is still not growing on its own yet so we have to continue to stretch it at least two times a day. 

Otherwise she is almost has 70% of her head control.  Sleeps for 7 hours straight in the evening. She is on track with her due date so  almost a two month old which is good.  

Week by Week

Pulmonology appointment

Yesterday I drove back up to Denver children's hospital.  Abigail was going there about her oxygen.  Her heart doctor wants her off oxygen asap to help her heart heal, primary doctor does not until acid reflex is done.  So we got referred to another specialist. The doctor was really nice.  She explained that the heart and acid reflex are not helping her lungs.  Yes the acid reflex needs to go away before oxygen come off.  She chokes and throws up to much which is a risk for aspirating.   

New plan per the new doctor, waiting federal for a home pulse ox machine.  During the day she will be hooked up and  off oxygen unless numbers are to low or heart rate too high.  At nights she will be on oxygen no matter what.  We are looking at 1-2 months hopefully and then off completely.   

She is taking two naps in the am. Normally a rest for an hour while I run.  When we get home she will sleep for an hour.  Wake eat and sleep for two.  We are slowly making progress.  

Baptism

Abigail was baptize today. Thank you Jackie and Jason for being her godparents and celebrating this wonderful blessing with us. 

Pastor introducing Abigail to the church, and Abigail is wearing her home made dress that mum made.  It turned out amazing.  

It was a beautiful morning for a wonderful celebration.   

Friday family day

Today we went to the county fair because Jon got free tickets.  Heaven was babysitting Wyatt so he got to jion us too. They pet some animals,

Heaven hot to play in a ball like a hamster,

And we watched a sea lion show and got a picture.  Can you find a part of Abigail?  

Church

Today at church the neeerst member was being held by the oldest member in the church.  It was beautiful 

After church we went to my friend Terri's house to take pictures of the girls. Abigail is on the left at roughly 8 pounds and Violet is on the right roughly 5.10 pounds.  Violet in this picture is the same size Abigail was at born. It show how much she has grow in two months.  

Doctor updates

Last Thursday Abigail went to a gastro doctor specialist out of Denver.  The doctor let me go back to a normal diet except caffeine, chocolate, and peppermint.   She also found that Abigail's rectum is too small. That would explain the lack of poop in two week.  So we have to stretch those muscles out twice a day with a plastic probe.  Kind of gross but after it is done our baby girls poops and is not as fussy.  She still has acid reflex and had X-ray on her upper gi.  That came back all good.  We go back to the gi doctor in three weeks for follow up.  

Everyone likes pictures

Today we went to the cardiologist, another specialty doctor out of children's hospital in Denver. Same doctor that read her ego in the nicu.  Abigail's heart murmur is gone but the hole in her heart is still 4-5 mm.   Doctor wants to follow up in a year. He thinks it will close on its own. If she gets sick a lot this winter or respitory issues then she will be seen sooner.  If it does not heal by 4-5 years old then they will go in and close it.  I guess that is good and bad news.  They want to wait till she is bigger and the recover is better then them now.  

Last we are doing her oxygen test tonight. The cardiologist wants her off oxygen to help heal her heart so I think she will be off this round.  

Thank you all for all the prayer for our little fighter.  

2 months

Today was her doctors appointment 

She weights 9.1 pounds and 23 inch long.  Doctor would like to see a little more weight on her but knows with the acid reflex that will not happens right now.  Oxygen will stay on until reflux is under control.  Belly scan is ordered for her waiting for insurance approval.  She sees a G.I. Doctor this Thursday in Denver at the children's hospital.  Next Wednesday she will return to the same hospital for her heart doctor.  Abigail sleeps around 5-7 hours in 24 hour period.  She is on medication for her acid reflex and it just got up today.  Please pray for relief for this poor baby girl.  We don't see too many smiles but when we do they are special.  

Church shower

We felt very love today with all of our church members. 

Today three ladies at church put on a small baby shower for Abigail. She has so many loving grandparents at church. 

July 5th

 Abigail was Baptized on Sunday July5th.  Jackie and Jason Clowe are great family friends that are her god parents.  Mum and Dad were able to come out for it as well, and Dad was able to meet Abigail for the first time.  Abigail is sporting the blanket and bonnet I wore when I was baptized and my Mom made her dress.  The newest member to Prince of Peace!

Abigail progress

Most of you know for the last 5 weeks we have been struggling with sleep, acid reflex so bad she can not lay down, and scream of pain even on medication.  This all leads to me not sleeping too.  I even had to stop dairy products and soy products in my diet. I think of the last five weeks I knew something was wrong but never realized how bad it was until neighbors or friend would say something is wrong call or take her in. 

Tuesday a friend said that and I am very thankful.  Late Tuesday I put a call into the doctor which was too late we had to wait til morning.  Over the night Jon and I thought we might need to go to the ER.  We waited out the painful screaming and was able to soothe her.  

Wednesday am the doctor told us to stop this second medication she was trying it was clearing not working and causing CONSTANPATION.    Wow for 4 days I waited too long.  She was throwing up so much and not pooping it took a friend to speak up. THANK YOU!

Abigail had her first dose of prune juice for the constipation and it worked in 30 minutes.  She blow out 5 diapers and got a bath before bedtime. She also got a new acid reflex medication!  We had to get it at a special pharmacy for them to chop it up and mix it.  They even added flavor to it, banana! She got her first dose before bed time and she did not care for banana at first. She fell asleep at 9 pm and Jon and I could already see a difference with less moaning while sleeping.  

Abigail got 5 hours of straight sleep with no crying no throwing up in her sleep.  I got a little worried but thrilled. After her first feeding she had normal burp spit up, and during diaper change and laying flat no spit up!   I know I can be celibrating early but our baby girl finally got 5 hours of relief!

Heaven update

We went to court today for Heaven and a permanency plan.  The judge approved the motion to move forward and seek other options then mom. So now October 5th is termination of moms rights.  After that it should take three months to adopt.  We are finally moving towards an end.  

One month old

Abigail is one month old.  She weight 7.5 pounds and is 20.5 inches long. She was 95% on room air.  Growing little girl. Man time is already flying. 

Smile

Heaven said she is smiling and waving.  I said pooping!   Great photo

Braces

Yesterday Heaven had her orthodontist appointment yesterday.  Before and after pictures. It's kind of weird how they do braces.  She will have perfect straight teeth in no time. 

Long day

What a day.  Started off with no sleep for two days now and I am getting sick. Took Heaven to vbs at 9am.  Then took one of the cats to the vet to put her down due to chronic pain and medication was not working.  Then picked up Heaven.  Took Abigail to doctors because of vomiting and fussy for a week.  While we were there Heaven got her next round of shots.  Doctor thought Abigail had pyloric vavle issues and we got sent to get an ultra sounds right away. The ultra sound tech said things look good but we have to wait for the doctor to get the results.  It's now 330 so we stopped for a quick but to eat.  Got home feed Abigail and I slept with her for  an hour.  Had dinner, went to neighbor for there daughters first birthday and now it's 8pm and I am going to bed.  

Photo shoot

Abigail had her first photo shoot yesterday.  She loves looking at the camera instead of sleeping so she was cranky.  What can you expect from a three week old baby.  She did good

Here is the link if you don't have Facebook or want to order some.  Please do not post the military ones on line

hhtp://simplyputphotography.pass.us/abigail

Another week

Monday Abigail went in for another check. She is 6.06 pounds, off the neuno sure formula and solid breast milk.  She is still on oxygen as they tested her off of it but her levels went down to 88 percent not good.  Her ego and cardiology appointment is August 5th.  She is doing great, sleeping for three hours and only cries when she is hungry.  

Heaven is at rainbow trail camp for this whole week. So we have a quiet house.  Jons tile work for the shower is almost done. Should be done with tile tomorrow and grout next week.  

Updates for May and June

May 19th was Heaven's court date.  Her mother did not show and the judge set a court date for July 13th for a permintance hearing.  That is one set closer to adoption.  Also social services submitted to the courts to terminate mom's rights.  We will know about that on July 13th.

May 22nd was the girls last day of school.  They are now going to be middle schoolers next fall.

May 27th the big Birthday!  Here are the detail from the doctors report since my memory is a little short with some of these details:
Abigail was born at 7:54 am weight was 5.9 pounds and 18.5 inches.  Her Apgar was an 8 and then dropped to a 7.  She is A positive blood.  Abigail came out crying but after a minute being born she stopped breathing (resparory distress syndrome).  They breathed for her, intubated her, put curosurf in her lungs, extubated her (pulled the tube out) and put her on Cpap.  Chest x-ray showed she had fluid in the lungs but no nemo, and no pneomoina.  They also thought she was septic (infected) but after blood work they said that was clear.  Abigail became Jaundice on the 29th.  she went under lights, then her lab work stated she was good for a couple of days and then it came back and went under the lights again. On June 1 she was pulled off the big Cpap and placed on Vapotherm cpap, also her mouth feeding tube came out and she got a nose feeding tube this day (which means she can start trying to feed her by mouth).  On June 4th she was placed on a nasal canula.   On June 5th they found a heart murmur, and Abigail got her first ECO on her heart.  The childrens cardiologist stated it might be an PFO or ASD, but her heart was too small to see right now what was going on.  She can out grown it by the time she is full term, or when she is a kid, or she might had it for life.  Worse case is a hole in her heart.  She will see the specialist again in two months.  Also on the 5th was her last time getting fed by the nasal feeding tube.  She ate all of her food by bottle or breast. 
Mom Left on June 7th in the morning, Thank you mom for all your help while you were here.  Heaven misses you already.
Abigail was relese on June 7th at 630pm with oxygen, after being in the nicu for 12 days.
June 8th was her first doctors appointment and her weight was 5.14 pounds, 21 inch long.  Growing big girl.

Olivia left on June 4th to see her mother.  She will be back July 22nd.  Just to let you know we are in a huge custody battle with her mom over a ly Olivia told her mom.  Please pray for Olivia and her health and well being as she has changed into a different negative person.  Her mother started the custody and wants her full time, Olivia wants to move with her mom but we feel that is not good for Olivia.  I will keep you posted on that statue when she returns. 

Heaven is doing great, she leaves for Lutheran bible camp for a week in the woods and no parents this sunday.  She is excited about that. 

update

Basement progress is low, will not be done for a while.

Mom and I stopped into goodwill yesterday,

and picked up this light for $5 

and hoped it work.

Jon put it up and yes it did.

Bathroom light done!

Baby update

Went for our last ultra sound.

Baby is head, arms and one leg down.  

The other leg is doing the splits!

YOGA baby.

Things are still looking stable so we are good for the c section on May 27th!

no good ultra sound pictures like normal because the kid never stops moving.

they said baby was 5.5 pounds, not really sure how that is accurate due to last measurement.

it was in the 70% tile.

We will see.

Baby news

Just to keep you all updates,
Babies multiple checks this past two weeks are great.
I got steroid shots last week.
Today at our visit baby was really hyper after ice cream
And would not hold still for over an hour.
They said the kid is great due to all the movement and let us go.

C-section date May 27th
8:45am

Monday baby update

Jon flew home Saturday and Mom flew in Sunday

 

Monday we saw the new baby doctor.

 

 

I had a non stress test and baby passed with no issues.

 

Got first round of steroid shot and the next one is today.

 

I am on home rest not bed rest, which makes me happy.

 

As long as baby hold out our new delivery date will be last week of May,

Waiting on surgery schedule for official date.

 

I have non stress test two times a week and see the doctor weekly. 

 

Next ultra sound is in three weeks. 

 

Thank you all for your prayers and blessing for the baby and family!